Fetal Alcohol: THE BASICS
Director, Arc Northland, Duluth, MN
(See her "bio" below)
|Most people will choose to do the right thing once they have the correct information about alcohol use in relation to procreation.|
Fetal Alcohol brain damage occurs at least 3 times more often than Down Syndrome. In Minnesota, at least $45 million is spent each year to care for people with FAS/FAE. It should be noted that this figure does not include special education or criminal justice costs. Each year, 27,000 Minnesota women drink at least once during pregnancy and yet many school districts consider FAS/FAE “low incidence” disabilities. Somehow, these different facts don’t add up. In Tennessee, the state reporting the lowest alcohol use by women of childbearing age, alcohol-related birth defects would be rare. In states like Minnesota however, alcohol use during pregnancy should be one of the first causes we consider when identifying the source of disabling conditions.
Any organ or system in the fetal body is susceptible to damage from alcohol consumed by the pregnant woman. But, as disturbing as heart defects, missing digits, liver damage or cleft palate may be, the most dangerous damage cannot be seen and often goes unidentified or is misdiagnosed. The organ of a developing fetus that is most susceptible to maternal alcohol use is the brain. Alcohol destroys fetal brain cells and causes thinning of brain tissue and structures. Depending on the extent of the damage, the life-long impact can be massive, slight or anywhere in-between. When massive, the brain can be incompatible with life. When less damage is done, the result can be a brain that appears normal but does not function as it should. Under this circumstance, the individual may also appear normal but will lack the ability to live a typical life. Fetal Alcohol brain damage is the primary cause of mental retardation in the United States. However, most of the affected individuals have intelligence in the normal range. Sadly, many with Fetal Alcohol damage have intelligence but not wisdom. The common sense aspect of the brain has been damaged.
Many people have the misconception that only alcoholic or “problem drinking” women can have babies with FAS/FAE. The reality is that even occasional, light or moderate alcohol use can cause devastating and permanent problems. Each fetus is different and the tolerance or intolerance to alcohol varies widely. Clearly, the more alcohol consumed, the greater the chance that a developing fetus will experience damage. He/she may also face a future of severe secondary disabilities such as poverty, chemical/alcohol dependence, mental health problems, inappropriate sexual behavior, unemployment and/or trouble with the law.
There is clearly a link between FAS/FAE and several other problems. This was proven by the University of Washington School of Medicine’s 4-year study of 473 individuals with Fetal Alcohol Syndrome and Effects. Their findings were published in September 1996 and entitled "Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome and Fetal Alcohol Effects". These findings indicate that 61% of adolescents and 58% of adults with FAS or FAE had been in trouble with the law, 45% had alcohol or chemical dependency problems, 90% developed mental health problems and many affected individuals experienced unemployment, homelessness, inappropriate sexual behavior, etc. And, though the Washington study is of great importance, the sample studied is relatively small and included only those people who had enough damage to be identified as having alcohol-related birth defects. It is likely that the majority of individuals with Fetal Alcohol brain damage have never been identified. Because of this, no one really knows how many people there are with FAS or FAE.
As stated previously, Fetal Alcohol Syndrome has specific physical characteristics by which it can be identified. These may include small eyes that appear wide-set, a pug nose, small head, low set ears, indistinct philtrum, thin upper lip, small jaw, flat mid-face, epicanthal folds and low nasal bridge. The characteristics may vary in degree. In order for this to occur, a woman must use significant amounts of alcohol early in the first trimester when the fetus’ facial structure is forming. There may also be anomalies of the fingers/toes, cleft lip and/or palate, etc.
Even though FAS has definite characteristics, it is often not diagnosed. Physicians may be unfamiliar with the signs and may not be able to identify FAS. Also, the number and severity of the characteristics vary widely and the features tend to modify when a person goes through puberty. When the mother is less than honest about her alcohol use during pregnancy or the prenatal alcohol history is not available, many professionals are reticent to identify FAS.
Fetal Alcohol Effect is a hidden disability. There are no physical characteristics. People with FAE look like everyone else and represent a much larger segment of the population. Without specific physical markers, the diagnosis must be based upon other criteria such as behavior of the individual (from infancy to adulthood) and the birth mother’s alcohol use history. Unfortunately, the behaviors of a person with FAE may parallel those of other conditions. Take, for example, Attention Deficit Disorder and Attention Deficit Hyperactivity Disorder, very popular “labels” these days. According to Calvin Summer, MD, a national leader in FAS/FAE and ADD/ADHD, there are only three biological causes of Attention Deficit: the inherited disorder or vulnerability, neurological trauma, and exposure in utero to neurotoxins (alcohol, lead, etc.). There is no solid data on how often individuals diagnosed with ADD/ADHD have the problem because of maternal alcohol use.
Because the diagnosis of FAS/FAE can be so hard to make, affected individuals are often given other labels. These include:
|Women cannot drink any alcohol in any amount at any time during pregnancy or nursing|
Secondary prevention is what can help to improve outcomes for people who already have Fetal Alcohol brain damage. The Washington study, as noted previously, identified specific factors that help to reduce the secondary disabilities that so tragically impact the lives of people with FAS/FAE. After a stable home environment, the number two “protective factor” discovered by the study was early identification and appropriate diagnosis. In other words, people with FAS/FAE had the best chance of an improved outcome when they were identified early (preferably before the age of 6 years) and received interventions appropriate for a diagnosis of alcohol-related brain damage. Even if FAS/FAE is not diagnosed in the early years, correct identification before the individual completes puberty is helpful. After puberty, it seems that little can be done to permanently alter the downward spiral toward poverty, alcohol/chemical dependence, violence, unemployment, homelessness, etc.
However, by educating the providers and professionals who work with this population, we can promote a change in expectations and increase understanding regarding the structure needed to save individuals with FAS/FAE from themselves. The brain is permanently damaged and nothing will change that. However, understanding the disability and attempting to work with the problem instead of against it, is key to improving outcomes for the affected individuals and society as a whole.
Bibliography: Fetal Alcohol - THE BASICS
| Just Say NO!
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